Roger's Thoughts

“If anyone votes for him they are giving credibility to a cult.” pstr RJ

2012-02-02T14:45:00.001-08:00

Vote anyone other than Romney.

If Republicans (or anyone) vote/s for him they are giving credibility to a cult. All this talk about Islam and Muslim xenophobia. Even the Socialism talk is outrageous. Democrats and Republicans constantly fighting. And yet right before us, we have a shining example of both. Mitt Romney is a Mormon. Mormons think of Joseph Smith as their perverted profit, embrace polygamy and socialistic dress codes, force teaching Mormonism in schools and even that Black-skinned people are of inferior origin –

Smith was “called of God”?? Really?
Matthew 7:15 – Beware of false prophets, which come to you in sheep’s clothing, but inwardly they are ravening wolves
Matthew 24:4-6 And Jesus answered and said unto them, Take heed that no man deceive you. For many shall come in my name, saying, I am Christ; and shall deceive many. And ye shall hear of wars and rumours of wars: see that ye be not troubled: for all these things must come to pass, but the end is not yet.
Matthew 24-11 And many false prophets shall rise, and shall deceive many.
Matthew 24-23-24 Then if any man shall say unto you, Lo, here is Christ, or there; believe it not. For there shall arise false Christs, and false prophets, and shall shew great signs and wonders; insomuch that, if it were possible, they shall deceive the very elect.
John 14-6 Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me.

From excerpts :

Ex-Utahn / 17 Oct, 2011 at 04:48 pm Do I really need to go on. I lived behind the Zion curtain in UT for 10 years. After watching my neighbors not even talk to my 3 yr old boy or come to our house on Halloween because we were not seen every Sunday at the local ward I decided to move my family out of there to a normal world again – somewhere where church and state are actually separate!! Not where my son would have to go to “study hall” one period every day while 90% go to “seminary” to learn about this false prophet!! Don’t EVEN try to tell me the church does not control state politics – I’ve witnessed first hand the re-mapping of electoral lines due to small areas of the city getting a small majority of non-cult followers!!

I read the book – seriously?? People believe that man – didn’t he use his “seer stones” to search for gold in the ground to rip-off people for money?? Look it up! In all my research about that charlatan Lucy Harris is the only credible witness to his writings – she proved he was a fraud and people still believed his lies afterward!!http://en.wikipedia.org/wiki/Lucy_Harris

And don’t tell me the crap about taking multiple wives to save them from the enduring hardships of the times – my ass!! He was a pervert. He took barely teenage girls before they were ever on any long, harsh trip cross country. Ask his first wife!!

If you believe in anything about the bible you know that those who worship this false prophet are doomed for eternity!
Someone else wrote about how they have lived a “clean”life and “what if they are wrong, at least their life was fulfilling?” If you truly believe the bible – an eternity in hell is not worth that. I’ll drink and have ***** without my garments on and take my chances with a religion older than my grandfathers made up stories!!

Mormon Beliefs

Prospective mormons are encouraged to pray to God to ask if the book of Mormon be true. They are told that the answer will come to them by means of a burning sensation in their bosom. Sadly, many people don't bother to check out the Book of Mormon according to more objective tests - like internal consistency, archaelogical support and so on. The fact that many mormons testify to this experience of "burning in the bosom" doesn't make the book of mormon true. It only means that there are spiritual beings out there which are willing to create that kind of sensation in people in order to promote the religion of mormonism. A well-informed Christian would know these beings to be demons. Lots of religions have spiritual experiences. Indeed, some of these experiences might be explainable in mere psychological terms, but a great many of them, in fact, are explainable only in terms of the spirit world. The Bible teaches that this world is full of evil, deceptive spirits who operate under Satan's command and seek to draw men into sin and destruction. To my mind, only such a scenario could adequately explain how so many otherwise intelligent people have been sucked into the religion of mormonism.

What follows are some of the strange doctrines of mormonism.

God was once a man - Brigham Young said, "If our Father and God should be disposed to wak through these aisles, we should not know Him from one of the congregation. You would see a man and that is all you would know about Him." (Journal of Discourse, Vol II, pg 40). Mormons belief that through faithfulness to the mormon doctrine they too may one day become gods with a planet of their own.

God the Father has many wives - God the Father, according to the "Pearl of Great Price" in "Abraham 3:9,16", is said to be living on a planet near the star Koleb with his wives having spiritual children.

Jesus was the spirit brother of Lucifer - according to this doctrine Jesus became the Savior because he came up with a better plan than Lucifer concerning how to get the people on earth to worship God (see The Kingdom of God, by Oscar McConkie Jr pg 46; Pearl of Great Price, Book of Moses, 4:1-3).

Black-skinned people are of inferior origin - mormonism teaches that the spirit beings that did not fight valiantly for God come to earth as blacks, while those who fought valiantly come to earth as whites. Until very recently blacks could not become priests in the mormon system of worship for reasons related to this and other demeaning doctrines. WTF??

President Brigham Young, for example, in the March 1863 Journal of Discourses 10:110, said:"Shall I tell you the law of God in regard to the African race? If the white man who belongs to the chosen seed mixes his blood with the seed of Cain, the penalty, under the law of God, is death on the spot. This will always be so." phycos?

We are saved by grace, after we have done all we can - who is there that has done 'all they can' in following any given religious system? No one. This is a kind of double-speak. Mormonism is a system of religious works and merit from start to finish. It is all about earning merit and a state of worthiness by obedience to the mormon religious system.

Joseph Smith will judge who may or may not enter into heaven. See Brigham Young, Oct 9, 1859, Journal of Discourses 7:282

Jesus Christ practiced Polygamy during His ministry on earth

President Orson Hyde, president of the Quorum of the Twelve Apostles, General Conference, October 1854, Journal of Discourses 2:210 wrote: 'I discover that some of the Eastern papers represent me as a great blasphemer, because I said, in my lecture on Marriage, at our last Conference, that Jesus Christ was married at Cana of Galilee, that Mary, Marthda, and others were his wives, and that he begat children.'

There are many strange and highly doubtful teachings and practices which have perhaps even less credibility than the prophecies of their originator - Joseph Smith.

Problems with the Book of Mormon - an extensive article written by a former believer in the Book of Mormon, who "studied his way out".

Out of Mormon Deception - a powerful testimony.

Berean Christian Ministries - Mormon Studies

C.A.R.M. - Matthew Slick has compiled some more information on the mormon religion which is very helpful. Sources: (1) (see http://www.allabout

-----------------------

From excerpts : ----------------------------------------------

If you do a bit of digging, you’ll get stories about how the Mormon Church has persuaded Mormons who were elected into public office to give preference to the Church when it wanted to acquire lands. There are plenty of political corruption cases where the Church bought parts of Salt Lake City that were once public parks, and turned them into church-owned parks with Mormon secutiy guards who would kick out anyone wearing the wrong clothes, tatoos, smokers, etc. Some may argue that this is no worse than cities that ban smoking, or that it’s the same kind of stuff that happens in other states, but think about the fact that it’s not a private favor here—the favor is taxpayer’s money going to a powerful church.

SOCIALISM AT ITS WORST: After the faith-based initiatives went into effect, Utah’s social services became an extension of the church—the church gets government money for faith-based rehab programs, and those programs get favored selection by the state. Government taxpayers money to a religion not on what our country was founded
The church owns a tons of Utah’s real estate. In fact, Motels, hotels, malls, and various department stores are all owned by prominant Church officials, who give their profits to the church.

Remember Footloose with Kevin Bacon? It was based on a real town in Utah, where mormon politicians literally banned dancing! Utah also has the most “dry towns” in the country—meaning many towns have banned the possession and sale of alcoholic beverages. IN fact, people often have to drive outside of the state to buy alcohol, and when they return, they have to hide their liquor the way drug dealers hide pot, because some cops will pull you over and check for it—like In Massachusetts, where fireworks are banned, and during summer months, State Troopers pull over people coming off of various highways from New Hampshire to check for fireworks.
Last Year, anthropologists working on a dig of Mountain Meadows were shut down by mormon governor Mike Leavitt, because they were uncovering the bones of the Mountain Meadows Massacre, where, in 1848, Mormons killed a group of immigrants. The Mormon dominated radio, TV, and newspapers did not mention a thing about it, and the secular non-Mormon news sources were the only places where you could find out about it. They also banned PBS from showing a documentary on the Mountain Meadows Massacre on Utah PBS stations.
The Salt Lake Tribune was the only newspaper that printed articles following the above events, and the church tried to buy them out in a hostile takeover with help from Mormon politicians.
Other stories involve Jewish families moving into Mormon-dominated towns, and then having their businesses mysteriously burned down, and law enforcement seemed unwilling to investigate (Of course, these are merely accusations).
The most insidious thing is that the Mormon Church has it’s greedy little hands on the Public School system. All junior high and high schools in the state of Utah are arranged so that there is a Mormon seminary building either right next door or across the street. Essentially, the Mormon kids receive extra religious instruction in these buildings during the school day. What happens, is that the public schools literally empty out at one point, leaving only a handful of non-Mormon kids to just sit around and twiddle their thumbs for an hour or two. Many kids get sick of being alone, or sick of being part of the “other kids”, and end up going with the Mormon kids.
Like many Evangelical towns in the American Bible Belt, many public school systems are run by administrators and staff who are Mormon church officials, and they use every opportunity to indoctrinate kids to the faith—in public schools. Non-Mormons are daily subjected to religious instructions, just like Jewish kids used to get lectured on Christian doctrine before 1964. Music classes in public school use a lot of Mormon religious music, too. Also—until recently, many public schools celebrated “missionary week”, a Mormon holiday commemorating young boys becoming missionaries. The public schools actively help them celebrate it.
The Mormons have also tried to ban pornography on many occasions, over the years. The Internet made this extremely difficult, since it meant that people could get porn without anyone knowing. The church actually has it’s own spy network, which spies on citizens (usually on church members) suspected of being involved with liquor, porn, or other legal-but-church-prohibited activities. [ THAT’S SOCIALIST ] The CIA regularly recruits people who served in this network, too. The legislature also tried to make it a serious crime (with high fines and prison time) to let under aged kids into R-rated movies.

Exit polls show that 43 percent of voters who said that the candidates’ religious beliefs mattered “a great deal” went for Gingrich. Only 9 percent went for Romney — a lower percentage than he netted overall, where he is running in second.

History

The Mormon religion was founded by Joseph Smith around 1830 in the United States of America. It is a fast growing religious movement which claims more than 12 million adherents worldwide as of 2006 (1). Mormonism teaches that historical Christianity is totally apostate, and God raised up Joseph Smith as a prophet to restore it. In addition to using the Bible (which they believe is totally inadequate by itself to tell us what we need to know), mormons believe that the "revelations" "discovered" by Joseph Smith which came to be written down as the "Book of Mormon" are Scripture. They also base their religious system on two other books: "Doctrines and Covenants" and "The Pearl of Great Price" as well as the pronouncements of their "living prophets", which they teach are Scripture and binding on all true believers.

Mormonism spreads primarily through its worldwide missionary efforts - good young unmarried mormon men are required to do two years missionary service. There are other recommendation for women and for those who have finished with child rearing responsibilities. Mormonism appeals to many on the basis of its appeal to strong family values. But when you look deeper into this mysterious and fascinating religion, you will find all kinds of bizarre practices and beliefs.

Mormonism now teaches that God was once a man, and that man may become a God (through mormonism, of course). This contradicts the book of mormon itself, but mormons don't really follow what the book of Mormon says anyway. Mormons are taught that God the Father is now on a planet near the star Kolob with his wives having spiritual children. They believe that Jesus and Lucifer (Satan) were once spirit brothers. They once taught that Jesus was married to more than one wife (I'm not sure if this doctrine is still taught). Some of the other fascinating religious beliefs of this group are listed below later in this page.

Many mormons at some time in their lives get involved in mysterious secret rites which are practiced at their special mormon temples. These rites include baptism for the dead. Mormons believe that by being baptised "in proxy" for their departed relatives and for others, they can release their souls so as to be able to enter a higher paradise. Mormons also believe in the importance of wearing a special kind of magic underwear, which is supposed to protect them somehow. This underwear is supposed to be worn at all times except when washing. The underwear has on it certain images from the occultic religion of freemasonry. Mormon temples are reputedly full of masonic imagery - apparently Joseph Smith was a freemason also at one stage. The temple rituals are supposed to be totally secret. However some former temple workers who left the mormon church have revealed the rituals as they were and probably are still practiced. You will not be any closer to God if you know the substance of these rituals, I can assure you.

The Mormon publication, "The Doctrine of Salvation, V.1." on page 188 states that "Mormonism so-called stands or falls on the history of Joseph Smith. For either he was a prophet, with divine calling, name and empowerment, or he was one of the greatest charlatans the world has ever known".

If Joseph Smith was a true prophet from God, then his prophecies should have come to pass. However, there are plenty of cases where they did not. For example, Joseph Smith claimed that before 1891, and before he reached the age of 85, Jesus Christ would return. Well, Joseph Smith did not reach the age of 85 - he was murdered on the 27th of July 1844. And we know that Jesus Christ didn't return before 1891, bringing an end to the present world order.

Smith prophesied in 1832 concerning the American civil war that the British would get involved and the war would extend to all nations. This is just one of his false prophecies concerning the American civil war. Smith also predicted the demise of the government of the state of Missouri which had displeased him - this never happened. He prophesied that the civil war would not result in the freedom of 'Ham' - this could not happen until the millenium according to Smith. Here again Smith was demonstrating just what a false prophet he was.

As to the character of Joseph Smith Jr., the historical record is clear that he was a man who sneaked off and took multiple wives, including the wives of other men, to be his own wives. He justified this with special revelations, claiming God told him to do it. Brigham Young, one of the early "apostles" of Mormonism apparently had 19 or more wives also. Although the mormon church today does not advocate polygamy or polyandry, why shouldn't they be willing to follow the leadership of their own Prophets? Could it be that those prophets were in error, or did God actually command them to do these things?

Mormonism can look good to sincere people who are untaught in the Scriptures. They have a well-oiled religious organization and an incredible amount of money to back it. They don't teach people all their strange beliefs until later on - especially after they are baptised. If Mormon beliefs were widely known by all, that cult would have a hard time gaining any new converts. But they will continue to gain converts no doubt, as long as widespread ignorance concerning the Bible exists around the world, and people remain open to the deceptive religious spirits in this world which deceive people by a thousand and one methods of false religion.

The other thing to note is that Mormons teach things which promote wholesome family life and they are really good at organizing family and community events in such a way as to create a tremendous support network for their members. Even so, lovers of truth need to look at the foundations of the movement, for what shall it profit a man if he has a great family life, if he loses his soul?

Megachurch pastor and Rick Perry supporter Robert Jeffress made waves at the Values Voter Summit when he said Mitt Romney was not a real Christian. He added that if Republicans vote for him they are giving credibility to a cult and declared that evangelicals should not support a Mormon.

Update on Roger and Our Family: By Julie

2012-01-14T15:19:00.001-08:00

Dear Family and Friends,

I thought it would be helpful for me to give you an update on Roger. It has been over 6 years since his diagnosis.

He continues to have a slow progression and we are very grateful for that. However, slow does not mean NO progression unfortunately. The biggest change lately has been his speech. We have for several months been adjusting to this change. We can still understand him, but it is just getting more and more difficult. It is extremely difficult to have to say "what" over and over again in a day to a man you just don't want to make repeat what he said because it is so difficult to talk in the first place. His legs continue to be pretty strong but they are progressing as well. He recently was fitted for leg braces (AFO's) to help give him some lift in his step which will help with any slight drooping he has in his feet. We think this will make him feel more confident when walking any distances. He did just have a check up in November to see how things are going. He had a routine FVC (forced vital capacity) test. This is the total volume of air expired after a full inspiration. A healthy person's measures at 100% or more. Back in July, 2010 it was at 84% and now it is at 70%. This is actually pretty good 15 months later, but is still tough to see it go down. The doctors say that usually when a patient's FVC gets down to 50%, it is usually time for a feeding tube because the swallowing is usually effected by then as well. Needless to say, he is not looking forward to not eating.....neither am I for him.

We are doing our best to all just take this disease one day at a time, but that is not so easy to do. We're told to be proactive which means thinking ahead.

We want to thank all of you who have supported us one way or another over the past 6 years. I know that Mary has been our sort of spokesperson without being asked to be. She has gone above and beyond what I ever imagined or expected. I cannot thank her enough for driving to see us 3 times now. Her and Carli are like Thelma and Louise I call them.....always up for a road trip. I also want to thank Roger's parents again for coming out to take care of the boys while I went to Premier's National Rally back in July. That was huge and I am very grateful for them coming out here to help. I definitely know where Roger gets his do do do personality. His dad was quite busy around here, as was his mom. My Auntie Pat and Gary were also out here to visit. Gary was a huge help to Roger with several projects he was hoping to see done. I also want to thank everyone who have been able to contribute to our Childs' Supplemental Care fund over these years. I hesitate bringing this up because I never want ANYONE to feel badly if they cannot contribute. We are just as grateful if not more grateful for simply keeping in touch with us and praying for us. THANK YOU SO MUCH!

I want to address the fact that I would love to talk with all of you but can't always do so. We really do appreciate hearing from you though and even emailing us and/or leaving us messages is nice. I will do my best to call back or email back, but appreciate your understanding if I don't right away. I really hope no one is upset with me in regards to this. I want to hear about your lives too!

This journey has been and continues to be a daily struggle mostly for Roger of course, but all of our lives have changed drastically and we really are trying to do our best with all that is happening to our family. Being diabetic is also an aspect of our lives that I am trying not to neglect.

I truly hope people don't stay away from us because they think we have enough on our plate or maybe because it is just too painful to hear about what is going on with us. Trust me.....it is much more painful on Roger's end. But here is what is most amazing.....ROGER HAS THE GREATEST ATTITUDE 99% OF THE TIME!!!!!!! He absolutely puts me to shame! I am learning how to be a caregiver...not just a caregiver, but a good one. There are times I basically go through the motions. This wonderful man can't help that he needs so much help (not at all his fault he has this) and care......care being the most important word here. Trying so hard to give care with care is something I didn't think would be difficult but actually can be at times. Roger does need me to feed him, shower him, dress him, undress him, brush his teeth, shave him, clip nails and get him what he needs/wants. We love each other and will continue to be here for each other. The boys are strong, but it does break both Roger's and my hearts to see them live through this. It really is so unfair and we can't change it so we do try and see the good that does come from it. They are compassionate boys who certainly know how to persevere through rough times in life. As their mother and father, we just never imagined they would have to persevere through anything like this. None of us did. Please pray for patience on my part and for each of our parts in our family. Connor is 15 now, a freshman in high school and is such a good kid who loves his dad so much, but can get agitated once in awhile. After all he sees his mom get that way sometimes too. Brandon is 11 now, a 5th grader and is also such a good boy who thinks the world of his daddy. He too helps him so much. He needs prayer for his worrying about daddy falling. He has seen this happen several times. It is just part of what happens to people who have ALS.....another aspect we need to keep an eye on and make changes when necessary. They both help me help Roger and I don't know what I would do without their help. I am so grateful to God for their strength. He gave us 2 amazing young men!

I continue to work my business with Premier and am super grateful for all it has done for me and our family. Because of Premier, I do get to stay home and take care of Roger during the day and not try and figure out how to do that while going to a regular day job. The boys do help here when I go to my shows. Again, looking ahead, there will need to be help to come in at some point as the care for Roger increases....but back to one day at a time.

We are looking forward to all going on a cruise I earned with Premier this coming March. We are excited to bring the boys this time. What a total blessing!

I once told Roger that I really didn't think he would be able to handle this disease very well (who could honestly?.....not many) because of how he is such a doer and likes to keep busy and moving. I then said that he has just been so strong through it all. His reply to me was that it wasn't him at all, but it must be because of God. That was huge to hear! Thank you God! He certainly does work miracles. We all just have to open our eyes and our hearts to recognize them when they happen. Who knows.......maybe we will get a miracle and Roger will be cured (along with the thousands of others living with this heinous disease). If that does happen, get ready for the biggest celebration on a sunny beach that you have ever been to!!!!!!

If you could please forward this out to others you think might want to get an update on Roger and our family, I would very much appreciate it.

Love,

Julie

Stephen Hawking Turns 70 This Month, Baffles Lou Gehrig Researchers

2012-01-06T13:50:00.001-08:00

Stephen Hawking will turn 70-years-old on Sunday and while that milestone occurs for millions of people around the world the achievement is something of a miracle for Hawking.

Diagnosed with Lou Gehrig’s disease when he was only 21-years-old and a student at Cambridge it was believed he would only live several years before succumbing to the disease that quickly cripples and then kills those who suffer from it.

Realizing he only had a few years left to live Hawking quickly began examining the universe and all it has to offer, become one of the most well known and respected astrophysicists the world has ever known.

The director of the Motor Neurone Disease Care and Research Centre in London recent told the Associated Press:

“I don’t know of anyone who’s survived this long.” while calling his progression ”extraordinary.”

With his disease in tow Hawking has never really slowed down, his book A Brief History Of Time was released in 1988 and has went on to sell more than 10 million copies worldwide. Despite being paralyzed in a wheelchair Hawking used a computer and twitching with his right cheek to communicate, he even went on to become the Lucasian Professor of Mathematics at Cambridge University, a position he just recently retired from.

One thing Hawking has never been able to master in our universe? Women, the one entity he still calls a complete mystery.

As a personal hero of mine I have to say that it’s quite fitting that a man who has fought with parts of the universe that baffle most people have himself baffled the very people studying him and his debilitating disease.

Are you a fan of Stephen Hawking? Share your favorite subject matter he has covered.

In the meantime enjoy the full screening of Hawking’s “Curiosity” video:‘

http://www.youtube.com/watch?v=fpb7NMR-XOo

Rog

Why I think buying music the new digital way is dangerous…

2012-01-03T13:34:00.001-08:00

Greetings! This is another one of my tech reminders, this time to convert any/all DRM music files you may have bought NOW to avoid losing any of your music. I want to make sure you can continue to enjoy all your music for as long as you please.

DRM stands for digital rights management (basically copy protection).

Here are a few examples of how things change if your not prepared:

On November 7th, 2011 Rhapsody/Real Networks quit supporting DRM music files you purchased before July 2008. These songs will NOT continue to play after November 7th, 2011.
Prior to 2009, Apple's iTunes Store utilized the FairPlay DRM system for music at $0.99. Apple did not license its DRM to other companies, so only Apple devices could play iTunes music. Currently the iTunes store does NOT have any DRM, but many songs can cost $1.29 each. (presumably to cover piracy lost profits)
Napster offers a subscription-based approach to DRM alongside permanent purchases. Users of the subscription service can download and stream an unlimited amount of music transcoded to WMA while subscribed to the service. But when the subscription period lapses, all of the downloaded music is unplayable until the user renews his or her subscription.
Wal-Mart Music Downloads charges $0.94 per track for all non-sale downloads. All Wal-Mart, Music Downloads are able to be played on any Windows PlaysForSure marked product but they rarely play on other players, like SanDisk’s Sansa player.

We used to buy our records, tapes and CD’s, now you never know what will happen with your music collection. Its no longer hand-me-down, inheritable or even something to garage sale. The industry has got the best deal over us. Unless you have made non DRM CD burns of all your music, (not just a .mp3 or .aac copies on CD), you may be out of luck. I strongly recommend you back up these tracks to both formats to ensure you can continue to enjoy your music. Each generation has to repurchase their MUSIC COLLECTIONS if we’re not careful…

Or, just buy the CD!

www.RogerChilds.com

Interesting Story I Wanted to Share …

2011-12-02T10:41:00.001-08:00

Thanks to the Rocky Mountain ALSA newsletter for this interview.

Advice from the Trenches

Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army when she was diagnosed with ALS. She's the author of "The Butcher's Daughter: The Story of an Army Nurse with ALS," in which she describes her journey openly and honestly. Although she is completely paralyzed and uses a ventilator, she lives an active life as a writer and nursing leader.

Q: Do you have any suggestions about how to enjoy the holidays? I find myself sad that I cannot do things the way I used to and feel a little overwhelmed, but I want to do all I can to enjoy my family and friends and to help them have a good time, too.

A: With the holidays fast approaching, it's a time for family get-togethers, giving thanks and sharing fun times. But with ALS intruding in our life and lifestyle, it's easy to fall into a mindset of believing that this year will never be the same as last year which leads to disappointment and unfulfilled expectations. It's necessary to change this way of thinking from being consumed with the negative to taking a more positive approach. Here are several things to consider and think about as the holidays draw near.

First, you should acknowledge, accept and adapt to the fact that the holiday will be different. But know that celebrating a holiday in a different way is not necessarily a negative experience; it can be very satisfying, if you approach it with the right attitude.
Speaking of attitude, ALS may take our strength and movement, but it can never take our approach to things. The way we deal with our limitations and obstacles is unique to each of us. Personally I refuse to allow ALS to define who I am.
As you prepare for the holidays, incorporate your new lifestyle in a meaningful way into new traditions. That means figuring out how you will transition from your physical role during the holidays to one that involves more planning, coordinating and delegating. For example, you can plan the menu, invite the guests, share recipes, assign food to bring, delegate duties, make someone in charge of games and activities, and much more. There is really no need for you to be physically in the thick of the bustle, your presence is felt in everything everywhere because of your planning.

So, there is really no reason why this holiday season can't be as memorable and enjoyable as any!

ALS Clinical Trials: Cytokinetics, Neuralstem Advance

2011-11-15T22:29:00.001-08:00

ALS Clinical Trials Briefs: Cytokinetics, Neuralstem Advance

CK-2017357 is being tested in combination with riluzole, and Neuralstem will test delivery of its stem cells into the cervical region of the spinal cord

Article Highlights:

Two human clinical trials to test experimental therapies in ALS are moving forward.
After having tested its experimental therapy CK-2017357 in people with ALS who weren't taking riluzole, biotechnology company Cytokinetics has now begun the second part of its phase 2 trial, in which the two drugs will be tested in combination.
Biotherapeutics company Neuralstem will begin testing the safety of transplanting its neural stem cells into the cervical (neck) region of people with ALS.

To learn more, read the full ALS News Online article.

Researchers Say They've Found Common Cause of All Types of ALS

2011-09-20T10:52:00.000-07:00

Yahhhh!

SUNDAY, Aug. 21 (HealthDay News) -- The apparent discovery of a common cause of all forms of amyotrophic lateral sclerosis (ALS) could give a boost to efforts to find a treatment for the fatal neurodegenerative disease, a new study contends.

Scientists have long struggled to identify the underlying disease process of ALS (also known as Lou Gehrig's disease) and weren't even sure that a common disease process was associated with all forms of ALS.

In this new study, Northwestern University researchers said they found that the basis of ALS is a malfunctioning protein recycling system in the neurons of the brain and spinal cord. Efficient recycling of the protein building blocks in the neurons are critical for optimal functioning of the neurons. They become severely damaged when they can't repair or maintain themselves.

This problem occurs in all three types of ALS: hereditary, sporadic and ALS that targets the brain, the researchers said.

The discovery, published Aug. 21 in the journal Nature, shows that all forms of ALS share an underlying cause and offers a common target for drug therapy, according to the researchers.

"This opens up a whole new field for finding an effective treatment for ALS," study senior author Dr. Teepu Siddique, of the Davee Department of Neurology and Clinical Neurosciences at Northwestern's Feinberg School of Medicine, said in a university news release. "We can now test for drugs that would regulate this protein pathway or optimize it, so it functions as it should in a normal state."

This finding about the breakdown of protein recycling in ALS may also prove useful in the study of other neurodegenerative diseases, specifically Alzheimer's and other dementias, the Northwestern researchers said.

ALS afflicts an estimated 350,000 people around the world. About 50 percent of patients die within three years of the first symptoms. They progressively lose muscle strength until they're paralyzed and can't move, speak, swallow and breathe, the researchers said.

More information

The U.S. National Institute of Neurological Disorders and Stroke has more about ALS.

Security Now 318 | TWiT.TV

2011-09-20T10:32:00.000-07:00

Security Now 318 | TWiT.TV

I watch Security Now... fun, geeky and educational (if u like computers)

Continuing to Work on Disability?

2011-07-23T19:28:00.001-07:00

When unexpected medical retirement comes your way, what should you do? Something you love of course! Continuing to work for my aerospace employer for more than two years after ALS diagnosis was a great choice. I loved my job very much. When it became more difficult to drive to work, carry my laptop to meetings, get a fresh cup of coffee or even keep my energy up throughout a full workday, I had to make a decision. Stay at work and use the time still available while my muscles are working at their best to be in the office or to spend more time with family traveling or playing games around the house with the kids. It did not make sense to continue working until I could no longer function and "then" go home to be with family and not be able to do much.

It soon became clear that my progression would be slower than normal. I did not know this of course, when I was making the decision to quit work and be home. Even though I loved my job, in hindsight, I would still recommend quitting work ASAP when given a diagnosis of ALS. Some may disagree and have significant reasons to continue working, this is just my opinion. (Some significant reasons to continue going to the office would be financial, insurance coverage or it may be best if you do not have family around and would only be sitting at home becoming more depressed.)
After a few years, primarily spent promoting ALS awareness and fund raising, I wanted to continue doing things that I enjoyed. I continued with many of my hobbies, but almost all of them became impossible except for computers. Spending most of the day on my many computers as well as answering so many tech questions for neighbors, friends and family, I thought, why not make some money while doing this?

Not being able to speak very well and performing computer tasks at a slower pace, I knew that my advertisement and pricing structure would have to be customized. Much lower prices and word-of-mouth would be the only way to acquire customers. Only remote support would work, as even if I could get to a customers house, I wouldn't be able to perform hard drive upgrades or memory increases without help.
Then, the question became whether I could earn a small amount of money on disability. Were there any legal or tax implications? The answer is simply, yes, you can do it! I would encourage anyone in similar situations to go for it and use their free time to continue hobbies that they can still do. Even if I didn't make money, helping people out doing something that I love adds joy to my every day activities.

So, I started Roger’s Computer Tech Support at www.rogerchilds.com

Get to it PALS, live!

ALS and Keeping Active: Geo-caching

2011-05-20T16:08:00.001-07:00

I thought that I would post a quick note about geo-caching and how much fun Connor, Brandon, and even Julie and I have been having doing this with the boys. Connor has even added a simple geo-caching page to his website HERE

Geo caching is a global treasure hunt with term aim and finding difficulties rated on a scale from 1 to 5. A rating 1/1 could theoretically be found by someone in a wheelchair having both accessibility of reach and terrain suitable for a wheelchair. On the other hand, a 4/4 may require extreme climbing, difficult puzzle solving, a long hike, underwater searching or possibly a few hours or overnight stay. A 5/5 includes difficulties at the top of mountain peaks, scuba diving, technical mountaineering and the like. I'd say that the majority of our findings are approximately 2/2 as is the case with most of the tens of thousands of geo-cachers.

Caching intro Video

It has also been fun to purchase travel bugs or geo-coins in order to keep tabs on where our collectables have been or are going. Some examples of collectibles or tracking bugs are shown below.

These trackables can log thousands of miles and hop from cache to cache for years to come .

Geo-cache hides can range from a simple microcapsules to a large 5 gallon Bucket. They can be disguised to blend in with their environment. One geo-cache we found required flashlights in a cave. Another required us to lift rocks and search near a river. Another was a very dangerous climb to the top of a tree and yet another was not a geo-cache at all, but a trash removal event called "Cache in, Trash out" CITO.

Of course, I watch my boys perform all of the aforementioned tasks. It's just fun to be out there with them and sometimes I help suggest hiding locations for them to look or help in solving the coordinate puzzles. Mom drives…

There is always something to learn when geo-caching. For instance, some geo-caches are called "Earth Caches". They may require you to observe a certain geological formation or other natural phenomena.

Here are pictures of NCAR in Boulder near the Flat Irons and also formations in granite that you need to identify while geo-caching. This is a xenolith. A xenolith is a rock fragment embedded in, and distinct in texture and composition from, a surrounding mass of igneous rock.

______________________________________________________

I am frustrated by my progression and some days feel as though my life is heading toward days of computer and Netflix all day. But I urge myself and you to get out there and find something that keeps you busy and most importantly, keeps you having fun with your family and friends.

Please check out this sport/hobby for ages 2 through 100 at www.geocaching.com. Accounts are free and you can even download a free app on your iPhone or android device. Connor purchased a geo-caching GPS made by Magellan with his own money, but it is not necessary.

If you join, send us a note @ user Agressor7. We have found over 150 geo-caches and have hidden 11 geo-caches five of which are very custom designed or puzzles. We even have a trackable on our car, so if you see such an emblem like the one shown left, be sure to log it on your account. Ours is 813K1Q

We have even used geo-caching to promote ALS awareness. See our trackable below.

Have fun PALS !

Foot switches, Track balls and bears, oh my!

2011-03-28T14:07:00.001-07:00

Things May Have To Move to the Feet…

BLOG UPDATE: And we’re moving to the feet now to test devices early….

________________________________________________

I've been getting’ by okay by using Dragon Naturally Speaking version 11 Pro along with a very carefully chosen Logitech mouse with the right click button adjusted to not click so easily (a little slip of highly calibrated :-) paper under the button) and the left click button modified with some rubber pad bumps to stop my forefinger from sliding backward.

For many years I used the 3M pistol grip mouse as seen in this picture.

I have recently talked to the local ALSA to discuss options for controlling the computer with my feet. My hands will still work for short periods of time or where I need the most accuracy, but if hundreds of clicks are necessary, my finger and hand will get very tired. I still do a lot of video editing, producing and encoding along with gaming and computer drawing/art. I figure if I can use two hands to move the mouse around, then I could use a foot pedal to control left, right and custom buttons with my feet.

The following is an assortment of devices that we are ordering and that I have either already tried or will be testing for review. "I'm the high-tech, handicapped beta tester" :-)

You can search on the web and very quickly find all sorts of solutions. A few that stood out to me are the Savant Elite foot pedals which can be used for Mac or Windows and also can have buttons with custom programmable features such as single click = double-click or a button that opens your inbox with one click, etc. Eventually, even controlling the cursor movements will have to move to the feet. http://www.kinesis-ergo.com/foot.htm

Later of course, all these functions will move to eye or head tracking devices as progression continues. The following links are for the the foot pedals and large trackball that I will be testing.

http://www.fentek-ind.com/Bigtrack.htm

Some organizations have done extensive work to offer free solutions for handicap people. One such piece of software can be found at http://www.cameramouse.org/. It uses your own web cam to tack your face! A free download. I'm actually so amazed that it works almost as well as the $1200 Head Mouse Extreme by origin instruments http://orin.com/access/headmouse/index.htm. I used this device for a number of months and found it to be very difficult to control and with poor software which was also very outdated (antient, in the high-tech world). It seems to be optimized for very basic computer use and when increasing its sensitivity to cover my 24 inch monitors, it then became too difficult to hold your head still in order to hover over a letter or icon. Even after playing with sensitivity and acceleration settings. Virtually impossible to use for any work that requires accuracy. Yes, I am somewhat of a computer nerd and hobbyist with nine systems.

Check out Augie’s SETUP here !

If anyone would like to write me about computer operation or input devices, I would be more than happy to help any patients or caregivers with as much assistance as they need. I'm happy to donate all of my time and knowledge regarding getting by day-to-day with ALS issues freely at any time.

I also offer remote, full computer support services. Write me!

NASA’s Mars Rover

2011-03-10T12:14:00.001-08:00

Opportunistic Déjà Vu

http://hirise.lpl.arizona.edu/

http://marsrover.nasa.gov/gallery/press/opportunity/20110120a.html

NASA’s Mars Rover, Opportunity, had another Photo Op perched on the edge of another crater. While Opportunity sat at the edge of Santa Maria Crater on Mars the HiRISE camera aboard the Mars Reconnaissance Orbiter (MRO) satellite orbited overhead and snapped the image below. This is the second time that HiRISE has been able to record a picture of Opportunity resting at the edge of a Mars crater. The last opportunity was October 3, 2006 when HiRISE imaged Victoria Crater with Opportunity perched at the crater’s edge moments before the rover carefully rolled down into the crater to explore the crater’s morphology.

Below is a expanded view of the Santa Maria Crater without annotations. Opportunity’s tracks are clearly visible running off the left of the image.

Below is an image of Santa Maria Crater taken by Opportunity from its perch shown above. The rock outcropping to the left below can be seen above at the bottom of the crater.

Opportunity took the image above by rotating and tipping up and down the Ball built mast residing atop the rover and taking smaller high resolution photos that were combined to form the mosaic above. The notches at the bottom give you an idea of an individual picture size.

The image above is a closer look at the rock outcropping displaying the impressive resolution of the camera. The diameter of the crater is about the length of a football field. On the horizon and off in the distance to the right is the crater Endurance which Opportunity visited earlier. Opportunity’s image of the Santa Maria Crater was sent back to Earth to celebrate the seventh anniversary of its landing on the planet. Not bad for a rover whose design life was thought to be 90 days!

Below are photos of Opportunity’s last Photo Op at the edge of Victoria Crater…

Below we are looking across “Duck Bay” on the rim of Victoria Crater. Opportunity has been superimposed at the edge of Cape Verde to give you a scale of the size of Victoria Crater. The rover is approximately the height of a 10 year old boy (5 ft.). Victoria Crater is roughly one mile in diameter.

I'm very proud of my Company

MDA Awards $2 Million to ALS TDI

2011-03-08T18:45:00.001-08:00

MDA Awards $2 Million to ALS TDI

Through MDA's Augie's Quest program, the ALS Therapy Development Institute has been awarded an additional $2 million for drug development research

MDA has awarded $2 million to the ALS Therapy Development Institute to support the Institute's ongoing drug development research.
This latest award will support preclinical testing of several different potential therapeutic agents in the SOD1 research mouse model of ALS, and will help expand ALS TDI's research program to include the TDP43 mouse model of the disease.
The new funding comes via MDA's Augie's Quest, an ALS research fundraising initiative, and brings the total amount MDA has awarded this nonprofit biotech company to more than $23.4 million since 2007.

To learn more, read the full ALS News Online article.

Reactivated Virus May Contribute to ALS

Normally dormant viral DNA could be causing damage in brains affected by amyotrophic lateral sclerosis

Autopsy samples have shown a viral protein called HERV-K reverse transcriptase is much more prevalent in ALS brain samples than in brain samples from people who died from other causes.
HERV-K is a "human endogenous retrovirus," a type of virus that often inserts itself into the human genome but is usually dormant.
There is evidence that the HERV-K virus is abnormally activated in the ALS samples studied.
If the HERV-K virus is activated and producing one or more proteins, blocking its activity or its proteins could be beneficial in ALS.

To learn more, read the full ALS News Online article.

www.als-mda.org
Scott Wiebe
National Director - Outreach Services & ALS Division

World Leader in ALS Research and Services

Amazing Meetings

2011-02-28T17:00:00.001-08:00

The number of patients in the world with ALS is very small as compared with other diseases. ALS patients are told they have 2-5 years to live and so the number of patients that pass in less than 5 years, based statistically, is close to 80%. In other words, there aren't many of us around long enough to make a difference. In almost every case I have witnessed, patients who exceed these life expectations have made significant impacts in their community or in the lives of others. It seems as though, if you have more time, you come to grips with your own fate and allow yourself to reach out to others.

Being blessed with a slow progression and the associated extended years is one thing, but PALS who reach out and are able to make significant impacts within the first year or two are truly amazing. Imagine that your disease is progressing at a rate that is making it difficult for you to do just about everything and on top of that, you add all of the responsibilities of coordinating fundraisers, attending support groups, being the chairman on multiple boards and taking the time to chat with other patients; while all the while, planning for your own progression on a daily basis.

A few days ago, I had the opportunity to meet one of these PALS, AUGIE NIETO. Augie and his wife Lynn went through some very tough times in the first six months after he was diagnosed in March 2005 including Augie attempting to take his own life through an overdose of pills. At the time of Augie's diagnosis they had 15 and 18 year old son's. They have persevered and have now raised close to $30 million and have contributed almost as much time and money personally.

My sister was able to get us in to an exclusive event being held annually by the YPO (Young Presidents Organization). Luckily, this year it was in Denver. This is an event where George Bush was scheduled to speak, Julian Assange spoke and many other very successful business leaders (Julian omitted). Augie Nieto of course, being one of those successful business leaders with his success inventing the Life Cycle and subsequently the Life Fitness empire.Augie has come from a dark, desperate, fear that many ALS patients and their families have known in the beginning, to one of being a hero, a role model and one of the foremost fundraisers for ALS in the past five years. ( including MDA ALS site - Augie's Quest & ALS TDI )

Augie and Lynn's story was very close to our heart of course, but it was good to see an entire room exposed to “A day in the life” of an advanced ALS patient for the very first time. A room of people that has the financial backing to make a difference one day. Lynn did most of the speaking and Augie used his computer to give us his funny "Top 10 reasons it's good to have ALS" in the Dave Letterman style. They both were very adamant that the use of humor to get through each day was crucial to them. And dark humor at that - and we couldn't agree more. At the end of the talk, Julie, my sister and I found ourselves to be the last people in the room still chatting with Augie and getting a tour of his highly customized Dynavox daily operations software. (After all, he is on the board of Dynavox as well)

#10 - The fatter you are, the longer you live (B.O.B.)
#9 - You can give advice to you kids and they might even listen.
#8 - You get to take medical marijuana.
#7 - You can go to a strip club, have a lap dance, and not violate the "no hands" policy.
#6 - You never have to buy new shoes.
#5 - You can have bondage sex without straps… You just lay there.
#4 - You can hire out as a carpool dummy.
#3 - You can ask a woman to unzip your fly.
#2 - You can take a shower with other women and your wife won't complain.

And the #1 reason that it is good to have ALS is:

#1 - You get to experience the love and generosity of your family and friends-every day!

Again, thank you very much to Augie and Lynn for their time and a wonderful talk. I feel fortunate to have seen Augie, because Lynn mentioned that it may be the last time they fly. They came with so much equipment, caregivers and bags upon bags of tools/supplies that it may not be feasible again.

1955th Day

2011-01-29T12:57:00.001-08:00

It's been 1955 days since we heard the bad news. September 22, 2005, yet I continue to defy all odds by still being able to walk and still being able to dictate via speech software. (Albeit, somewhat slurred at times) It's been 4 1/2 years since I've been able to water ski (this was me on the SDSU ski team in San Diego). But, I was able to snow ski as recently as last March 2010. Both were some of my favorite things to do. I considered skiing last month, but I'm afraid that the weakness in my legs may cause me to fall. Being injured at this point, I doubt my body would ever recover or be able to rebuild any muscle loss after a cast came off. It's just not worth it. I started skiing at age 3, so I got a good 40 years in and never missed a season. Plus, if I were to even tip over, I would need people to help me even stand back up with all that gear.

Sports are one thing… However, not being able to play the drums for the past five years has been one of the hardest challenges. I enjoyed it so much. Not only was it good cardio exercise when I would practice for hours at a time, it was an escape and a time to enjoy playing along with my favorite music. I have enjoyed watching my older son become very good at playing. It has allowed me to still play vicariously in my mind Through him.

Luckily, I was never Someone who lacked hobbies or things to do. Being "bored" was a 5 letter word in Our house. Lately, I keep myself busy by working on the computer, which is a hobby of mine. I have all the tools necessary to help others through remote support and am looking for people to contact me who need help setting up parental controls, network monitoring for kids, antivirus/malware software installation, program training or fixing any general problems people may have on Windows or Macintosh.

My other favorite thing to do was Amateur astronomy & astrophotography with all of my Telescope gear…

ALSO, driving my Porsche up in the mountains which I’ve since had to sell and stop driving all together..

LIFE IS SO AWESOME WITH ALL THE THINGS GOD LETS US HAVE, LIKE MY FAMILY!!!

Why Can't They Just All Get along?

2010-12-14T15:16:00.001-08:00

For years now. I have not been able to understand why ALSA, MDA, ALS TDI and a handful of other support/research groups have not been able to get along and coordinate their support and "primarily" research. They each collect their own money, have their own fundraisers create their own research centers and, while this seems fine, at least you would expect them all to share information. This is not the case. Recently I found out that ALS TDI one of the leading research centers for specifically ALS in the world has not received one penny from ALSA. Being that ALSA is one of the #1 fund raiser in the United States, if not second with MDA, I find it hard to believe that none of their resources are directed toward ALS TDI.

As a patient. I find this extremely frustrating and using examples from other diseases, I don't really understand the reasoning or politics behind it. Cancer research centers cross communicate, Parkinson's, Alzheimer's and multiple sclerosis groups seem to share at least basic knowledge of trials and drug candidates. I also became aware of a Facebook group which has the sole mission of boycotting ALSA, National due to its inability to use funds for "significant" research. Don't get me wrong, ALSA on the local level is extremely helpful and useful when it comes to patient and caregiver support, but of course they're not involved with research. Our family receives tremendous support from our local Rocky Mountains Chapter.

This all became very apparent to me in the preceding months before our CBS special, Live for the Moment (LF TM), which aired on January 28, 2010. In order to make the most out of the show and its slot on primetime Thursday night CBS television, I began working very hard to make ALS TDI, ALSA and MDA aware of it. I was very successful in getting buy-in from ALS TDI and their full support to put the show's logo on their website. ALSA national also was very eager to promote the show and had a write up and logo on their front page as well. It was a little bit more difficult with MDA due to the way it was handled between their representative and the CBS. (A long story). In the many writeups and comments from the ALS community that followed, ALSA was criticized for not buying airtime just after the show as a public awareness opportunity and a chance to point people to websites where they could donate time and money.

I'm not quite sure what can be done in order to encourage the primary groups to engage one another more frequently and at a greater depth. The willingness also doesn't go both ways equally. What I mean is, ALS TDI is extremely willing to work with ALSA and MDA, and in the case of MDA, they have the Augie's Quest initiative, which does donate considerable funds to ALS TDI in Boston, Massachusetts. However, ALSA seems to be an organization that is closed and operating primarily within its own boundaries. If this is not the case, I have failed to find evidence of it on their prep site.

Some groups focus on caregiver assistance and equipment for patients along with the fundraisers and awareness events to raise money for the use activities. Other groups focus solely on therapeutics such as the Therapy Development Institute. MDA and ALSA are organizations that try to do both and it would be far more effective to funnel all funding into, one highly capable organization. Maybe the funding would reach such a level that the government would take notice and match or contribute additional funds. There are multiple facets to this philosophy such as, if multiple centers are doing the research, then you have multiple approaches and different thought processes going on. But no one seems to have enough money to make headway on their own. Anyway, maybe if all of the research groups were to be housed under one roof and pooled all of the money, then the multiple philosophies and drug approaches would be combined with uninhibited communication between the groups.

Yeah, like that would ever happen in my lifetime…
I would love to hear your comments and read any thoughts you have on this topic.

Thoughts on Lyme disease “or” ALS

2010-12-05T23:22:00.001-08:00

I wanted to put my thoughts on this matter on the record. Before you read too far, let me be clear that I do not believe there are the links that we are led to believe by so many postings on the Internet. I recently posted a video of leg fasciculations on YouTube here. I received multiple feedbacks as well as many comments about whether or not it could be Lyme disease and not ALS. In fact, there is an entire movement out there that is convinced that many ALS cases are in fact untreated Lyme or "chronic Lyme". I have read about people taking large dose intravenous antibiotics (ceftriaxone as talked about in the videos below) in order to combat this. I have first hand knowledge on this (more on that later). There is also a move to have people believe that various unproven health and "antiaging/nuerological" health supplements sold by many MLM outfits will have you cured and your symptoms reversed lickety-split. Be very wary people.

The majority of contacts I have received always seem to include a segment on how inaccurate and incapable blood tests are at detecting Lyme disease. While it may be true that standard blood tests are inadequate, my interest wanes quickly as I discover that they want me to take a certain supplement, call a certain Dr. or begin some miracle therapy. I myself, had my blood work done by the premier lab just for this type of test. After also being pulled into this "Lyme" lie/scam/false belief... etc., I had heard of David Martz, MD through a friend and had watched his videos online. A close friend of mine, also with ALS, was contacted by someone in Texas who had worked with Dr. Martz and his staff out of Creek Trail Medical Clinic in Colorado Springs. Dr. Martz has since retired and Dr. William Harvey has taken over, at least as of 1 1/2 years ago.

About Lyme

Part 1 - Theory that ALS and other motor neuron diseases are linked to Lyme disease

Part 2 - ALS, Multiple Sclerosis, Alzheimer's and theorized links with Lyme disease

Their theory was also that some bacteria or disease that could be treated with powerful, high dose antibiotics delivered intravenously. Before treatment, however, both my friend and I had blood drawn and sent off to IGeneX, Inc. By the way, I also had blood tested at the Houston Medical Center as well as the University of Colorado Medical Center. Which were also both negative for Lyme. Watch the videos in this post to form your opinion.

With regard to high dose antibiotics delivered intravenously;

…….tbf

Spain Oddities

2010-10-13T08:14:00.000-07:00

Place: Sitges, south of Barcelona Spain
Near the Mediterranean seaside town Cathedral

Date: June 2009

Connor, next to the world's largest green Converse hightop.

It's taking up 2 parking spots as compared to the silver car behind it.

Strange art can be seen around the world.

Some Astronomy & Fun Happenings

2010-09-23T10:42:00.001-07:00

After a few weeks of fairly low activity, a lot of fun things have recently happened.

Some Astronomy Fun:

Connor and I when out for a viewing session of Jupiter as it makes its closest approach this September 2010 until the year 2022. I had sold my larger Meade LX 200 GPS scope approximately 2 years ago, but kept the smaller Meade ETX 105 for easier viewing sessions and eventually something to pass on to Connor and Brandon. I hadn't brought it out in over a year and even thought about selling it. (I've recently been wanting to buy a Macintosh)
Well, it was late, but we decided to pull it out and set it up at about 9:30 PM. Julie wasn't thrilled that was keeping Connor until 1130, but hey, has been over a year. The moon was almost full and as sparse clouds slowly passed by the crystal-clear sky, Jupiter was out in all its glory. It was almost 75°, a gentle breeze kept any bugs away and it was perfect.

Connor and I have seen Jupiter many times and I have even spent many hours imaging Jupiter with both the 10 inch scope and the 5 inch scope.

My neighbor came over and it was his first time looking through a telescope, ever. I think he enjoyed it very much and was also amazed at the detail that was visible on the almost full moon. I mentioned, of course, that the real in viewing the moon is when it is first quarter or less. All four Gallery in satellites were clearly visible as shown in the astronomy program graphic below.

And here is a picture I took of Jupiter back in 2004 And the rest of my astronomy hobby Photo album!

View Full Album

More research on ALS

2010-09-22T13:41:00.000-07:00

Get enough to eat and drink

(credit to another ALS patients blog)

Most people find a gastrostomy tube is much more comfortable and easy to use than they thought it would be.
Malnutrition, present in 16 percent to 50 percent of people with ALS, is a predictor for worsened survival, according to a study published in 2000. The main cause of malnutrition in ALS is swallowing dysfunction, resulting from paralysis of muscles involved in swallowing, but weakness of the muscles involved in chewing food also contributes, as does a higher than normal metabolic rate of uncertain origin in this disease. (My metabolism has always been skyhigh)

A vicious cycle can ensue, in which poor nutrition exacerbates weakness, and weakness in turn limits food and liquid intake.

Signs of insufficient intake of calories may be obvious, such as excessive and rapid weight loss. But for those who like an objective measurement, a body mass index (BMI) of less than 18.5 is considered a red flag. To calculate your BMI, go to www.nhlbisupport.com/bmi.

While you can still swallow and chew safely, take in foods and liquids that are dense in calories, such as high-calorie shakes and bars, and high-protein foods like meat, fish and eggs. Drink plenty of fluids to avoid dehydration. I try to eat high cholesterol meals as well as high caloric meals. I will discuss the high cholesterol portion of that statement later.

When eating and drinking are no longer safe because of fear of choking, or when eating a meal takes so long you become exhausted, it’s time to consider a gastrostomy, or PEG, tube. PEG stands for percutaneous endoscopic gastrostomy tube, which relates to how the tube is inserted. The end result of PEG tube insertion is a small tube that goes directly into the stomach from outside, not something that goes through the nose or down the throat.

Most people find it’s much more comfortable and easy to use than they thought it would be.

A very active online forum at www.als.net/forum is operated by the ALS Therapy Development Institute (an ALS research institute in Cambridge, Mass., supported by MDA) and provides a variety of opinions and experiences with the PEG tube and other aspects of ALS therapy.

From an anonymous ALS patients post: “Best thing I could have done! No more choking, no more dehydration, no more weight loss. ... When I got mine I was still walking and drinking normally but having trouble with food, and I’d lost 35 kilograms (77 pounds). It would be fair to say I was in denial, and it took a while for me to adjust to the idea of having limited food intake. Now I can’t believe I was so silly.”

Breathe well

Noninvasive ventilation can prolong life despite a decline in respiratory muscle function.
As the muscles involved in respiration — the diaphragm and the intercostals, which are between the ribs — weaken, it becomes harder and harder to move enough air in and out of the lungs. This is especially true when lying on one’s back, as the weight of the abdominal organs creates even more resistance for the weakened diaphragm. I haven't had problems breathing while on my back and my FVC is still at 85%, but I have noticed needing to take additional breaths during sentences.

In recent years, a large percentage of ALS patients have opted for “noninvasive ventilation,” or NIV, to help them with their breathing. NIV delivers air under pressure (with a normal percentage of oxygen, not an oxygen supplement) to the lungs via a face mask or mouthpiece.

A 2007 study showed starting NIV earlier prolongs survival better than starting it later, when respiratory function is worse. This study used 65 percent of normal forced vital capacity (the amount of air one can exhale after taking in a deep breath) as the dividing line between early and late intervention. People who started using NIV when their forced vital capacity was at least 65 percent survived an average of 329 days longer than those who started it when their FVC was lower than 65 percent. NIV can be used for as many hours of the day or night as the person wishes and can easily be taken on and off.

Although NIV may prolong life by months or even sometimes years, for indefinite survival with ALS, “invasive ventilation,” which means ventilation through a tracheostomy tube, is almost always required. A tracheostomy is a surgically created opening in the trachea. Not only the delivery route but the type of ventilation device used with it provides for more complete substitution for normal respiratory muscle function than does NIV.

Surprisingly few studies have followed the course of people with ALS who have opted for invasive ventilation. In fact, many studies use “death or tracheostomy” as an end point, implying that these are approximately equal. That, however, is certainly not the case, so it may be that following people with tracheostomy ventilation until death would take so long the study could not be wrapped up in a timely fashion.

A small study published in 2003 in the journal Neurology found that, out of 70 people with ALS in Tokyo who opted for tracheostomy ventilation, 33 survived more than five years on it. In that group were three people who lived for 10 years on tracheostomy ventilation and two who survived for 18 years. The most common cause of death was pneumonia, followed by cardiovascular disease.

The down sides of tracheostomy ventilation are that it requires respiratory care that poses a significant burden on family members or costs a great deal if professionals are hired to help, and that it may allow for prolonged survival even when all voluntary muscle movement has been entirely lost and even communication is difficult. Still, many people are happy with this option.

From an anonymous ALS patients post: “My wife decided to follow the doctor’s suggestion and get her trach early,” noted an ALS TDI Forum visitor in March. “It’s been over two months now, and it has made a huge difference. She looks 10 years younger, has good color, and hasn’t taken a nap since the procedure. She was on BiPAP about 17 hours a day before the procedure. Her oxygen saturation has been excellent. ... Caring for her can be a bit overwhelming at times, but it sure is a lot better than the alternative. We are convinced we made the right decision!”

Extreme Fasciculations or Twitches

2010-08-20T10:09:00.001-07:00

ALS has so many facets and so many varied symptoms. Lately, one in particular, fasciculations or twitches of muscles throughout the entire body has been causing me much discomfort and distress lately. If you’ve ever had a twitch under your eye or a finger twitching, in ALS, it is a little different. It feels as though the muscle is rippling underneath the skin much like a snake belly ripples as it propels itself along. Mostly, they are small and distracting during the day because I am able to still move about so much and not notice them (as much). Occasionally, there can be a sudden twitch like a rogue wave in the ocean that causes a limb, finger or arm to actually move a bit. I hate it when this happens while I am trying to control the computer mouse… :-)

ALS Fasciculations/Twitches

As I said, this isn’t so bad during the day, but just try to sleep with this going on all over your body. The doctors say that there are no drugs to subdue this symptom, but it can be masked by taking Valum or other relaxants prior to bedtime. I tried baclofen for a long time to combat this, but it appears that I don’t have the symptoms that are best suited for baclofen (i.e. muscle cramps and/or spasms: more on muscle cramps in a moment). Clonezepam has been prescribed for anxiety, but it has a side effect of subduing fasciculations. I take 1 mg of this approximately 2 hours prior to bed. It works faster than this to make me tired, but when I hit the bed, I want to be out immediately and not lay their feeling these movements.

Take a look of the video to get a better idea of what I’m talking about. The lighting had to be just so… to cast shadows in the proper way to make them visible to the camera. These occur in my upper arms, chest, calves, neck, tongue, etc. sometimes I believe that I experienced fasciculations far more than the normal ALS patient. Also, I truly believe twitches are the beginning signs that those muscles are beginning to atrophy. My legs have been strong for almost 4 1/2 years, but are now starting to show signs of significant atrophy. My forearms and hands don’t really experienced twitches anymore and they are almost totally useless. All in all, I realize that I am a slow progression example and thank God every day for the many additional years that I have been granted. It angers me and upsets me deeply when I hear stories of people who are affected by ALS in the more traditional two-year timeframe. This shitty disease needs a cure, and fast!

* This was dictated with Dragon Naturally Speaking ver. 10 Pro speech recognition software. Please excuse any "Speakos" I may have made. :-)

Getting to See ALS Research First-Hand

2010-08-19T21:17:00.000-07:00

While on vacation and in Michigan, Julie and I were invited to see the ALS research being done at the Van Andel Institute. We met the project director and the post-doctorate researcher in charge of drug study. A friend of the family also works at the Institute and was aware of this research was nice enough to set up the meeting for us.

After arriving, I was amazed at the beautiful architecture and the size of the Institute including the cavernous entry and lobby area. We had lunch at the

Institute cafeteria which was more like fine dining. The researchers were so interested to be talking to an actual ALS patient. They

spend so much time in books and other research materials, that it is not often that they have the opportunity to visit, sit down and discuss what it is that they are working on all

day and are so passionate about understanding and curing. They listened carefully as I described in great detail the onset symptoms, how it progressed, what issues I cope with today and we even delved into a little bit of my history growing up, activities/hobbies and family.

In the lab, we were able to look at the SOD1 mice that they use to test various drug therapies. The researchers showed us how to tell the difference between “in stage" (mice with ALS symptoms) and unaffected younger mice. We were able to see slides that were prepared for microscopic study and also see mice spinal cords that are used for research. Not that I am a big laboratory animal fanatic, I say test more, but it was nice to learn that the mice are euthanized as soon as it becomes difficult for them to obtain food or water. An interesting fact that I had not thought about. Similar to what some humans are fighting for..?. but that's another story and not one that I support.

Anyway, I want to thank the staff for an incredible opportunity and Julie and I were so proud to see people hard at work trying to cure this awful disease. I figure it best that I don't use names as there may be some crazy mice lovers out there... :-)

Mount Rushmore and our cross-country Trip

2010-08-14T18:25:00.000-07:00

We left on July 6 and traveled for 5 1/2 hours arriving in Keystone, South Dakota. It was raining, but we thought to visit Mount Rushmore anyway. Very surreal with the grey clouds and the grey faces blending together. The next morning, just as we thought, beautiful weather and crisp blue skies. Definitely a worthwhile trip. we also went through bear country, which I highly recommend. About a 2 Hour drive through an open wilderness Park with guaranteed sightings of many different wild animals.

We continued on through Minnesota, staying the night and continuing along I 90 in to Wisconsin and then entered Illinois from the north.

We were able to stay west of Chicago and miss the five o'clock traffic. Rather than spending the night and taking an extra day, we decided to press on and arrived in Rockford Michigan, north of Grand Rapids at almost midnight. We were all glad that we continued on and finished up the drive. We stayed four days at Scott and Mary's Lake House where we did a lot of tubing, airplane flights and barbecue parties.

After our visit, we headed off to Texas for Premier Designs National Rally and the boys stayed behind to return to Colorado along with Todd, Carli and Mary driving. They were able to take a more central Route than our northern Route and got to see the St. Louis Arch. The crew of four kids along with Mary also pressed on to make the drive and arrived back home in Colorado late that night.

So much more to share, but I will have to save all that and all the other pictures for another day.

Beating the odds so far in battle against ALS

2010-06-11T01:41:00.000-07:00

Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, attacks nerves and causes degeneration of the brain and spinal cord

By ANNE LINDBERG

St. Petersburg Times

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PINELLAS PARK, Fla. — Steve Franks was stunned when the doctor told him he had ALS.

"I'd heard of it, but I didn't know what it was,"Franks said. "The diagnosis changes your life significantly, at least mentally, trying to get your head wrapped around it."

ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, attacks nerves and causes degeneration of the brain and spinal cord. Victims lose the ability to control their muscles and eventually end up paralyzed and unable to breathe on their own. They never lose their ability to think or feel, however. Most victims die within two to five years after being diagnosed.

There is no known cure.

Franks, 51, has beaten the odds so far. He was diagnosed with ALS seven years ago and, although he had to quit his job as a golf-course supervisor, is living a full life.

He has also become a somewhat reluctant spokesman for ALS awareness. Reluctant because he is not typical of most victims, and he fears that people unfamiliar with the ravages of the disease will look at him and think ALS isn't so bad.

"That's one of the frustrations I have,"Franks said. "The general public doesn't realize what a cruel and horrible disease it is."

On the other hand, Franks sees himself as lucky because the slow progression of the disease enables him to help raise people's awareness about ALS. If more money were funneled into research, Franks said he believes discoveries could be made that would slow the progression of the disease for all sufferers and allow them to live normal lives.

"There's not enough of us to make the government and the pharmaceutical companies spend money on research,"he said. "We're just not a good return on investment. That sounds horrible, but it's the truth."

So when the ALS Association Florida Chapter created its "Piece by Piece"campaign, Franks jumped at the chance to be in charge of it. The campaign is composed of 150 legless, armless mannequins. Each wears a T-shirt with the name, birth year and year of death of an ALS sufferer.

"It's a metaphor for how Lou Gehrig's disease steals your body piece by piece,"Franks said.

Since the campaign began in January 2009, Franks has hauled the mannequins about 10,000 miles — all over Florida and, most recently, to Washington, to promote awareness.

"That's hard, telling your kids,"Franks said, tearing up at the memory. "It was hard on them. Hard on my wife. Hard on my mom."

He added, "It's important for people to know how devastating this disease is. Not because I want sympathy. But until there's an uprising or a big push with awareness, there won't be funding that leads to research."

What Can You Say

2010-05-26T10:17:00.001-07:00

To someone who is newly diagnosed, what can you say? How can you make them feel as though the entire world hasn't just crumbled before them?
This is one of the most difficult things that I have been presented with over the past going on five years. We found the other PALS (People with ALS) in the first few weeks after being diagnosed. This was incredibly important in order to have someone to listen to you who knew exactly where you are coming from, and for me, had a wife that could listen to Julie and to understand what her concerns, fears and questions were.

I have surmised this: God has a plan for each of us and I believe he only puts trials in our life that he knows we can handle. Also, it takes an extremely strong individual to go through ALS with a good attitude and optimism to help others and to be a strong soul for those that we love around us.

Put those two things together, and that means that God thinks you are just such a person. Newly diagnosed patients are, of course, new to this reality and this news. Although it never stops shocking you each day that you're dealing with this, it does however, get easier to live with and to accept. What are you going to do, crawl into a hole and be depressed all day, no fun to be around? No, you must continue living and taking each day one at a time to slowly adjust to your new reality. You can do this pissed off, or you can slowly come to peace with it. It is all a decision that you may! (and of course, don't shy away from antidepressant help) This is not a weakness or a lack of faith in God, it just readjusts the chemicals back to the point at which they were before you found out this news and drove them to depletion.

My thought was to keep working at my job, but then it became apparent to me that I should be spending the most capable and energetic years with my family and kids. I quit work approximately 2 years ago and feel so much better that I have spent more quality time with my family than I probably would have spent over the next 10 years.

The newly diagnosed ALS patient will become stronger and they will find something that gets them up every morning and find something that they are passionate about to give them that drive. It is crucial that you discover this and it took me over two years. I kept asking why me? Why would a young guy with two children be afflicted with a terminal disease? What good could come of it and if God has a plan, I would like to know what it is. That is certainly not to say that you will be in a terrible situation in the near future, it is just to encourage you that this shock will subside. For sure, whether in two months from now or one year from now, you will find peace with this situation and a place from which to make a difference in the world. It is not for you to be strong for yourself, but for you to show others how life is to be lived no matter what life has thrown at you.

1. Don't overwhelm yourself with Internet searches and research just yet. Focus on life and fun! Intensely love those around you!

2. Don't talk about ALS and your future after 6 PM each evening. Rest, relax and don't let this topic take over all the conversations with your wife or other family. It does no good to help you fall asleep in the evening.

What is going on?

2010-05-14T14:36:00.000-07:00

Well, here is a little bit of a disjointed entry... The kids are excited to be out of school soon and are now counting down the school days 13, 12,... even though summer is approaching, you wouldn't know it by the weather here in Colorado. We got up to about 80° and two days later it was 31° and 4 inches of snow. A day later it's sunny and warm and the next day it rained all night. I actually really enjoy this weather and still am happy to live in it as compared to sunny and 70 every day in California. Sorry to all my old buddies back there in SoCal.
We are excited to do a little bit of traveling this summer and possibly a couple camping trips. The drive to Mount Rushmore, Michigan and then flights to Texas for national rally and flying back home. Friends of ours have volunteered to help our family camp through helping set up tents, and carrying all of the assorted gear. Of course, the boys know how to do all this, but a father generally take care of the majority, at least in my camping experience. Julie enjoys camping (somewhat), but definitely could do without all of the set up and tear down work. Steamboat Lake and a nice campsite in Rocky Mountain National Park are our favorites. We would like to also visit Yellowstone and camp near Old Faithful geyser.
Doing all of this is definitely getting harder with the continued progression and weakening of my arms. Now, my neck muscles are getting into the act (act of not working very well), and this is contributing to weakness and fatigue quite often during the day. Recently we went to a ALS fundraiser, and walking through the tables for the silent auction items, with my head looking down, turned out to be a very difficult task. I find myself either wearing my neck brace or trying to balance my head in a very neutral, straight up position.
Experimenting with usage of different mice, the mouse head tracking unit called "Headmouse Extreme" and also trying to stay on top of training my speech software as my voice changes. I still very much enjoy being on the computer, updating all my social networking sites and staying attuned to all the latest technology.

Survivor Host, Jeff Probst, on Live With Regis and Kelly

2010-05-04T16:34:00.000-07:00

A Quick Thought about Speech Software Options

2010-05-04T13:16:00.001-07:00

currently I use nuance, Dragon NaturallySpeaking 10.1 professional because my voice is still usable. After that, options become much more expensive and it depends on which muscles have stopped working. You could use a head mouse extreme to communicate with the computer and type words for it to speak or you can go all the way up to the Dynavox. I also started doing something called "voice banking" in order to have words and phrases in my own voice available for when I lose it. www.modeltalker.com has software to do this.

Our Latest Excursion to the Shooting Range

2010-05-04T11:39:00.001-07:00

Connor and I had a date at the firing range. Connor shot a 45 caliber and 30,06-270 hunting rifle as well as our 22I just supervised and instructed the operation.. Fingers can't pull triggers anymore him him

The boys are getting so much older

2010-05-04T11:27:00.000-07:00

Here are the latest school portraits for both of the boys. Brandon is nine and will be 10 this August. Connor is 13 and will be 14 this August as well. They are "all boys", with interests in science, mechanical projects, PS3/computers and active in soccer. Mom and I couldn't be more fortunate and are very thankful for both of our precious sons.

Another entry with some good news and bad...

2010-05-04T09:14:00.000-07:00

Today is my wife's birthday! She is 41 years old and more beautiful to me than ever before. She means everything to me and has been (and is) a rocksolid pillar of support in my life. The love and best friend of my life.

We lost a dear friend to ALS on April 30, 2010, Joe Eades. Joe had ALS for approximately 2.5 years and his progression was fairly quick in the last six months. As I visited him, I realized that the progression was quicker than he and his family could keep up with as far as making the proper adaptation arrangements for the bathroom, wheelchair and speech tools. It affected me very much so, as Joe was the first close friend that I had known to pass away from ALS. we will all miss Joe very much, but have solace in the fact that he is now free from the muscle atrophy and the deteriorating body.

Things with me have been going fairly well with a little bit more progression in shoulders and wrist muscles. I notice my speech being affected a little bit more, but only late in the day or after I have been talking for a long time. I never realized how much the tongue is used in chewing food. A little bit of atrophy can make it extremely difficult to move food around and then talking is even more difficult when the tongue is worn out. However, I am still using my speech software successfully even to write this blog post. Dragon naturally speaking version 10.1 Pro from nuance has been working excellent for me. I tried to speech recognition tool that comes default with Windows 7, but it is nowhere as accurate even after a considerable amount of time training it.I know that I should be working on my voice archiving for use with speech computer tools in the future, but as of yet, I have only recorded approximately 25 to 30 different sounds, words or phrases.

May is ALS awareness month, so get out there and do anything you can to support ALS awareness and fundraising!

A Cruisin' to a Bruisin'

2010-03-21T14:17:00.000-07:00

The Cruisin'
Wow, what a week. Make that three weeks actually. We were so excited to leave on our Eastern Caribbean cruise and we did all the preparation to get ready and pack. Everything was uneventful getting there and we were amazed at how large our suite was with 150 ft.² of our own balcony space, our own butler, breakfast, lunch or drinks in the room and a special VIP only restaurant to attend. The cruise itself when it really well. First we stopped in the DR and then went on to the US Virgin Islands/St. Thomas and then on to the British Virgin Islands/Tortola. (Only about 10 miles apart) of course on a cruise line, we went at around 5 kn all night cruising as far south as 17° latitude before heading back north to Tortola. The weather was beautiful and we really enjoyed the Virgin Islands. We did not get off the boat at Samana and that the reports were not that great. We spent Thursday at sea and on Friday morning the ocean was too choppy and the swells too large to allow for tendering service to Great Stirrup Cay. We slowly headed back for Miami at about 7 kn the entire way. We didn't have that far to go in the made for extremely smooth sailing. Overall, a great trip. Aside from a three-hour delay in Miami and the ground crew forgetting to load luggage on the plane, we finally got home at around 1 AM Saturday night.

The Bruisin'
as they say, "if you play, you pay!". Julie started to not feel well in the airport and it became much worse on Sunday and by Monday she was diagnosed with bronchitis. That then travel to me and I have been sick much of the entire week. We were able to get much done and did a lot of sleeping while the kids were in school. Luckily they had a good week at Dennis and Becky's house and none of them took ill. So, we're just starting to get better win yesterday morning I slipped on the ice and slammed the back of my head in to our concrete step. Reluctantly, four stitches later... I still have a headache and suspect it will last a number of days more. Stitches will be removed on March 31, 2010. I definitely thought it was a fitting title-cruising to a bruising!

a pleasure helping others

2010-02-12T17:34:00.000-08:00

Julie and I have been sent so many messages of inspiration, encouragement and hope from all over the nation. We worked very hard to get back to most everyone and Julie has even had conversations with a few of the families. We have heard from Michigan, Florida, Pennsylvania, California and so many other ALSA chapters as well as families. We are so grateful to have these connections and to be able to help people who have recently found out that they have ALS, PLS or other similar MND's. Some feedback has come to us which has been less than positive regarding the show and the focus of it. Honestly though, this has been less than 10 letters out of close to 1200. A very small percent indeed, but it was interesting to us that those few writers came from the ALS patients groups that we are in touch with through newsgroups or forums. And, of the people writing from that group, it was sad to notice that they were progressing quickly. I thank God every day for a slower than normal progression, but it's not fair to anyone living with ALS and certainly is much worse when things are going quickly. It has so much to do with attitude and outlook. Some people in those situations are very bitter, mad at the world and quite frankly in shock about why something so awful would happen to them. It appears that the first year or two is spent dumbfounded in the shock and not knowing what to do. It then appears that after two years or more, people become a little bit more either comfortable or understanding of their situation and attitudes seem to change. Either people become more at ease with their own mortality or caught up in an attitude of making the most of the time that they have left. This is all very hard to put into words, and I'm not exactly sure why I felt like writing about it... I suppose it just helps me to put these things into writing and possibly my thoughts may be shared with others. I'm open to any criticism or feedback on this post. In fact, I am interested to find out what others think with regard to post diagnosis the motions and the various phases that patients go through when dealing with ALS.

continuing exchanges after the show

2010-02-03T11:47:00.001-08:00

Julie and I are still continuing to go through the thousand or more e-mails, thank you notes and donations after the show. This is not a chore, but a pleasure, albeit a time-consuming one. We are also receiving countless recommendations with regard to different supplement regimens, lying disease or other conditions that people are telling us about. I came across an interesting article, here http://tvnz.co.nz/view/page/411317/2192910?cfb=3 and there are countless others. We have also been made aware of many new websites and also new ALS resources or family stories.

Floods Have Hit

2010-01-27T14:31:00.000-08:00

As a flood of support and outpouring comes toward our family prior to the airing of "live for the moment", unfortunately, we've also had a flood and outpouring of water from our upstairs bathroom down into the ceiling of our family room.
In so many ways God tests us each day, and yet, here again, is another one of those tests. Julie and I were mad, blamefull and overall very unpleasant during the whole ordeal. It could have been a lot worse if I had been trying to explain to Julie or anyone else with able hands where the water valve was. As it happened, I was able to get to it and have my nine-year-old help me pull the panel off. Now, the carpet has been pulled back, the pad has been cut away and two of the drywall sheets have been pulled off the ceiling. In the end, the worst thing may be some cuping of the wood floor upstairs. What seems so bad at first, may not be that bad with the proper perspective.

Today I am doing phone interviews with www.Zap2It.com, www.RealityNewsOnline.com, www.TVGuide.com

Just Some of My Thoughts to Criticism

2010-01-08T17:10:00.000-08:00

a response to potential criticism on our intentions...
-------------------------

I have been a part of this forum for years now and consider it extremely important. Personnel at ALSA and ALS TDI have previewed the show and say that it is one of the best that they have seen. People in these organizations would certainly know how we all feel. "Live for the Moment" was shot almost one year ago and we're extremely grateful for the opportunity. We've received the opportunity to travel and make memories with our family, but most of all, to achieve our number one goal of raising awareness, interesting volunteers to help ALS families and hopefully additional funding to find a cure.

The show is ultimately about living for the moment even in the face of adversity or after a life-changing event whatever it may be. I thank God every day for a slower than normal progression, but since the show was shot, my arms and hands have become significantly more atrophied. My wife now helps me shower, dress and while I can start feeding myself, I usually tire fairly quickly and she finishes feeding me. No one understands better than us PALS the realities of ALS, but this story reaches a larger audience and encourages living each day to the fullest and as if it were your last no matter what your situation may be. Too many people wait until it's too late and may lose focus on what's most important in life (family) or on their dreams.

I am an enthusiastic and optimistic guy. I'm not saying that ALS is easy, but I certainly feel strongly that it cannot be dealt with when a negative attitude is present. I have done my best to bring awareness and resources toward a cure for us all. I'll await the full airing of the show to comment further and hope you will find it inspirational. In a TV world that is showing crap like "Beavis and Butt-Head" Or "Jersey Shore", etc. I for one support any show that brings hope, inspiration, focus and family to the forefront...

The Excitement Is Building

2010-01-06T13:36:00.000-08:00

Well, I haven't written down my thoughts in a while, but a quick update is that we are fast approaching the premier of Live for the Moment LFTM on CBS.Jeff_Probst is now on twitter now and we have been having fun promoting the show. We just watched the short LFTM web promo and a longer 2 1/2 minute TV commercial online, they both came out great. The whole process is so exciting! Of course, keeping our eye on the ball, the entire show was done in order to promote and team national awareness for ALS. We were paid nothing aside from the opportunity to travel with our family. I guess you could say we were paid with memories of some incredible events and experiences. Being the first family for this show, over 400 hours of film was collected in which our family traveled and had so many experiences that are even shown in the final cut. I'll write more about these experiences and even post some of the pictures after the show airs. Until then, "must abide by the contract"... :-)

This was dictated with Dragon Naturally Speaking ver. 10 Pro speech software. Please excuse any "Speakos" I may have made. :-)

Super Exciting News

2009-12-19T00:11:00.000-08:00

We are so excited to now be able to share that our TV show "Live For The Moment" LFTM, produced by Jeff Probst and Mark Burnett will be shown at prime time on CBS, 8 PM EST/PST and 7 PM Mountain/Central on January 28, 2010! in the typical Survivor timeslot.

So much more to come as we begin promoting the show and contacting various agencies.

A response to a new ALS patient...

2009-12-19T00:06:00.000-08:00

A lady on our ALS forum who feels she is progressing quickly and also has two children ages 17 and 12... There are so many questions from people who are newly diagnosed with ALS. I try my best to help newly diagnosed patients. Unfortunately, I know what it's like to be there...

Hi ?????,
I never did take the Rilutek and never thought it would have much impact on progression speed. At best many patients say that it only helps in the last stages of ALS. (I.e. last two months) my progression is abnormally slow and I thank God for that fact every day. It has been for the half years and my hands, arms and shoulders have atrophied significantly. Although I can still use them to do daily tasks, is not without fatigue and difficulty. My wife cuts my food and we also purchased a special toilet seat boduet. My legs are still working well and we even went skiing a few weeks ago with my arms dangling and no polls.
When I was diagnosed, my kids were age 8 and four. After, we kept it to ourselves but felt strongly about beginning to give our eight-year-old a little bit more information. Eventually, through our outreach and involvement with fundraisers, they both began to understand the entirety of the situation. Now, at age 13 and nine, they both understand what ALS is and what will most likely be their father's final outcome. We have looked into counseling for our 13-year-old and he is, in fact, involved with seven other kids in a special discussion group both for moral support as well as school improvement ideas. Going through puberty isn't helping either. We don't notice any changes with our nine-year-old behavior except that he is very willing to help me around the house. He does act much more concerned about his father Dan many of the other kids on the block. This will be a great benefit to him later in life-the compassion and patience. Our older one doesn't seem to be affected by our situation, but my wife and I know better than that. We know that at his age there must be many thoughts and fears because of future changes and the unknown. It's hard to find a counselor that you feel comfortable with and that you can feel is actually making a difference. We find that just talking to them in a very open way while in the midst of playing games or some other activity, is the best way to find out how they are feeling and what they are thinking.

My Website Involvements: How does one take charge of their own situation?

2009-11-11T23:17:00.000-08:00

We have found ways to become involved with the ALS community. Both from a fund-raising standpoint and from an awareness standpoint. I have a very strong dedication to the ALS TDI organization due to the work they are performing and the fact that they are solely focused on a cure for ALS. I don't know of any other organization that is this large and working this hard solely on one disease. This isn't to say that patient services and other assistance isn't important as well, it is just the fact that I really want to see a cure for ALS within my lifetime of course. :-) See our personal family site below and also our contributions and involvement with Patients Like Me. PLM is a global database where patients with many different disorders can come together in one community and share their medical regimen, feelings, questions and other concerned with people in similar situations. One of the exciting elements for me, is that PLM allows you to create database queries or other filtering techniques which can turn up some fairly interesting results.

https://rogerandjulie.alscommunity.org

ALS walkathon

2009-11-11T21:57:00.000-08:00

Every year we have attended ALSA "walk to defeat ALS" fundraising event either in Fort Collins or in Denver city Park. Here is a picture of our family as well as our dog just before we got started. We had a chance to meet all of our friends and I was able to do all three laps. Last year I had ran two of the three laps, but this year I elected to walk. (Although I felt that I could have ran probably 1/2 to 1 lap.) Either way, God has blessed me and my family. We feel very privileged to take part in this fund raising event. Please consider joining us in 2010. Or, you can find a ALSA sponsored event in your area. we went by the name, Team Roger. Www.ALSACO.org

My FVC results have just come back

2009-11-10T14:47:00.000-08:00

Wow! I spent the better part of two months panicking about whether or not my FVC would stay above 90%. There are completely healthy people who have FVC's in the 80s, but I just felt that if I went into this zone, it would just be another reminder and another event that was sort of "in my face", that ALS was taking its toll. having my hands, arms and shoulders loose virtually all muscle tone is bad enough. I am not blind, of course I know there will be further progression, but every little bit of positive news helps!

Well, I am happy to report that after 18 months, having my last FVC in July of 2008, I am now one point higher at 92%.

All that worrying for nothing. The Dr. was very pleased with this result and we were able to bypass any discussions related to bypap or other therapies related to reading difficulties.

Living with ALS

2009-11-04T16:42:00.000-08:00

I thought that I would start a blog in order to document some of my thoughts and feelings. I'll be using my speech software in order to get these words down and try and keep my thoughts cohesive, I will just keep talking even though the software may make mistakes in understanding me.
After diagnosis almost 5 years ago, the first two years were spent not really knowing how to respond to this new knowledge. Part of me was in a panic and wanted to take family photos and video as well as go on trips as often as possible. You begin to become tired and worn down after A while of keeping up a hectic travel pace. I wanted to help others who were newly diagnosed. I was able to do this successfully to some degree, a few people that I met with have now progressed further than myself and I have yet again entered a new timeframe of my diagnosis.
It now seems strange that my aggression has gone so slowly. What am I to do with this time that I strongly feel God has given me. (is this what they mean by "survivor's guilt"?) Every minute is precious, yet I don't find myself treating each minute preciously lately. True, some of my capabilities have been diminished, so I can't be running around and as active as I once was. But, there are plenty of things that I can do over the phone or through the computer that I still don't seem to get a handle on. part of me feels like I am battling and emotional component to my daily life as well. Well, of course, some people would say-you have ALS... but, beyond that, it just doesn't seem like my attitude is the same as it used to be. I could have started this blog by retracing my feelings as far back as 2005, and I still may do that at some point in a different section. These are the feelings I have now and they reflect the position that I am in with my diagnosis and in my life at this point.